SINGAPORE - In the last days before his final surgery on Nov 12, 12-year-old cancer patient, Raphael Lee, had begun thinking about his own death.
Sensing that "something was not quite right", he asked his mum, Mrs Winnie Lee, 45, what would happen if her only child died before her. If he did, he hoped she would donate his body to scientific research.
On the day of the surgery, he was crying softly outside the operating theatre. "I don't think I've seen him so afraid before," she said.
"Just as he was being sedated to begin the operation, he was telling me, 'Mummy, I don't want to lie down, I want to sit down. I want you to hug me'. So that was how he went into deep sleep, and that was the last time we saw him, alert and awake," she added.
In that poignant moment, said Mrs Lee, no words were shared but the bond between mother and child was strong and heartfelt.
On the operating table, Raphael suffered from excessive blood loss, which resulted in brain damage. He died the following day.
Raphael had dealt with various cancers since he was born, as he had Li-Fraumeni Syndrome, a genetic disorder which predisposed him to a wide range of rare cancers.
His father, Mr William Lee, 47, a course manager with non-profit humanitarian organisation St John Singapore, also has the same syndrome, and was diagnosed with Stage 2 colon cancer in August.
Despite being so ill for the last third of his life, Raphael was a curious and determined child who read up on his condition, genuinely loved learning, and joined various clubs in school, where he had many friends.
After collecting his son's PSLE results last Wednesday (Nov 25), Mr Lee had a moment's regret about not postponing Raphael's surgery so that he could have seen the results for himself.
But Raphael's biopsy results, which also came back that day, showed there was a chance the cancer may have spread to other parts of his body.
"So with that, I think his departure was timely. It would've been more difficult for him to receive happy news of his results, only to fight yet another wave of cancer, which he might end up succumbing to," said Mr Lee.
Raphael's first operation was at eight months of age for rhabdomyosarcoma, a rare form of soft tissue cancer in 2008. After a year of treatment, the disease went into remission, but resurfaced in 2016.
That necessitated a second operation in Primary 2 for osteosarcoma, or bone cancer, in his left forearm. He was to lose that arm the following year, to halt the spread of the cancer.
After his cancer came back, and despite being so young, Raphael read up on cancer, the side effects of his frequent chemotherapy treatments, and quizzed his doctors and nurses on the medications they gave him.
His parents said his inquisitive mind and genuine interest in learning saw him persevere through the Primary School Leaving Examinations (PSLE) in October, in which the Alexandra Primary School pupil scored 220 points, with As for mathematics and science, and Bs for English and mother tongue.
"Math and science were his favourite subjects in school, and he enjoyed challenging himself with mind-boggling math problems in his free time," said Mrs Lee, a childcare teacher who quit her job last year to look after her son. He was also an avid online-gamer, and he joined various co-curricular activities in school such as chess club, speech and drama club, and robotics club.
"Robotics was something he thoroughly enjoyed, as it allowed him to get creative. He was hoping to build something which could be useful to him in future, like a prosthetic arm," she added.
Raphael's fighting spirit and zest for life inspired his classmates and other cancer patients at KK Women's and Children's Hospital (KKH).
"He would go around to encourage the other cancer patients in his ward, which also earned him the Inspirational Patient and Caregiver Award from KKH of 2020," said Mrs Lee.
His classmates remember his pluck.
"I was paired with Raphael for an adventure camp in Primary 5, and I remembered how determined he was to complete the obstacle course despite the fact that his left arm was amputated," said Hugo Tang, 12, Raphael's classmate of six years.
"I supported him throughout the course, and the whole class was watching and cheering for him."
Another classmate, Jeston Teo, 12, said he missed his friend very much, and wished they could talk on the phone again, as they used to do for hours on end, sharing jokes with one another.
No matter how sick Raphael was, he always spared a thought for his loved ones.
In the days before his final operation, Mrs Lee cooked a few of his favourite dishes, but the child was so ill that he had lost most of his appetite.
"Yet, he would still reassure me and tell me that 'Mummy, I'm sorry I couldn't finish the food; it's not that it isn't nice, it's just that I'm very full," she said.
One of Raphael's gifts which Mrs Lee holds closest to her heart is a "message in a bottle". Inside the bottle is a simple note that says, "I love you Mama", with strokes of green, her favourite colour, on the back.
He had given it to her before an operation in December last year to remove his right collarbone, as the operation was going to be a challenging one.
"The message was so simple, but very thoughtful," she added.
"He was a boy of few words, but it was always his wish to inspire others with his story. During his wake, there were many attendees who came, some of whom we did not even know. But all of them said he was very brave and strong."
Explaining why the couple had agreed to media interviews and sharing Raphael's life with people, Mr Lee said: "Now that he is gone, perhaps I should be the one (to continue his legacy) and inspire others on his behalf."
Raphael's cancer journey
Diagnosed with rhabdomyosarcoma, a rare form of soft tissue cancer, when Raphael is eight months old. Has chemotherapy for a year.
Disease goes into remission.
Diagnosed with osteosarcoma, or bone cancer, which starts with swelling in his left forearm.
Undergoes his first operation, in which cryotherapy involving liquid nitrogen is used to destroy the cancer cells.
Another swelling found close to left wrist. Arm is amputated to prevent the cancer from spreading further.
Another tumour is found on his right collarbone, catching medical team by surprise.
The collarbone is removed, and Raphael told to be careful not to put too much weight on his shoulders .
Magnetic resonance imaging (MRI) scan shows cancer has spread to Raphael's lungs.
April, May 2020
Undergoes operations to remove tumours in right and left lung respectively.
The operations are successful.
Two months before the PSLE, doctors finds cancer in lungs has returned.
Nov 12, 2020
Undergoes second operation, but suffers complications during surgery.
Nov 13, 2020